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Patient Stories, Podcast

“Joined at the Joints:” How Marissa Became a YA Romance Writer with RA

4 months ago
47 min read
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Episode Summary

Have you ever read a love story that features someone with chronic illness? In this episode, author Marissa Eller shares how living with RA led her to write her debut young adult (YA) romantic comedy book “Joined at the Joints.”  She and Cheryl discuss the importance of authentic representation in books and media, particularly for those with invisible disabilities. 

Marissa also shares what it’s like to be an author with RA, including strategies to accommodate her needs and how writing can be a therapeutic form of expression. The conversation concludes with a discussion about the best advice for the newly diagnosed.

Episode at a glance:

  • Marissa’s Diagnosis Story: Marissa shares her experience of being diagnosed with rheumatoid arthritis at a young age, and what it’s like to live with the unpredictability that comes with it. Her mom also has rheumatoid arthritis.
  • Representation in Media: Cheryl and Marissa discuss the importance of depicting invisible disabilities authentically in literature and other media.
  • Being an author with chronic illness: Marissa shares practical strategies to manage physical discomfort while writing. She also explains that writing allows her to express herself and can be therapeutic. She talks about her book, “Joined at the Joints”, a romantic comedy with disability representation.
  • Having a supportive community: Cheryl and Marisssa share coping strategies and the importance of a supportive community for individuals with chronic illnesses, especially to take care of mental well-being. They talk about the role of friends, family, and online communities in managing chronic illness.
  • Advice for the Newly Diagnosed: Marissa encourages listeners to be patient and kind to oneself. To her, thriving with arthritis means still doing what she loves, and living out her dreams.

Medical disclaimer: 

All content found on Arthritis Life public channels was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.

Episode Sponsors

Rheum to THRIVE, an online course and support program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. See all the details and join the program or waitlist now! 

Speaker Bios:

Marissa Eller is a novelist with chronic pain and an abundance of emotions. She holds a BA in English from the University of North Carolina at Pembroke and an MFA in Writing from Lindenwood University, which she uses in her work as an academic consultant.  She resides in Hickory, North Carolina with her family and two rescue cats, all of whom she couldn’t love more if she tried. When not writing, reading, or helping students, she can be found thinking entirely too much about her favorite TV shows, obsessing over a band she’s loved since she was fifteen, or enjoying an afternoon nap.

Cheryl Crow

Cheryl is an occupational therapist who has lived with rheumatoid arthritis for nineteen years. Her life passion is helping others with rheumatoid arthritis figure out how to live a full life despite arthritis, by developing tools to navigate physical, emotional and social challenges. She formed the educational company Arthritis Life in 2019 after seeing a huge need for more engaging, accessible, and (dare I say) FUN patient education and self-management resources.

Full Episode Transcript:


Interview between Speaker 1 (Cheryl Crow) and Speaker 2 (Marissa Eller)

Episode 130

[Introductory music]

Cheryl:  00:05

All right, I am so excited today to be joined by Marissa Eller. Welcome!

Marissa:  00:10

Thank you. I’m so excited to be here. Thank you for having me.

Cheryl:  00:13

So, I can’t wait to delve into the topic of the day. But first, let’s do a little introduction. Can you let me know where do you live? And what is your relationship to arthritis?

Marissa:  00:24

I’m from Hickory, North Carolina. And I’ve had RA for about five years. So, I was diagnosed when I was right around 21. And then, my mom also has rheumatoid arthritis. So, she has had it for probably, I don’t know, 10, 15 years at least. So, I kind of grew up with it as a part of my life. But then it became obviously even more personally a part of my life when I was diagnosed at 21.

Cheryl:  00:54

That’s the same age as I was when I was diagnosed. 

Marissa:  00:56

Oh, really? 

Cheryl:  00:58

Yeah. Yeah. Yeah, I’m 42 now so it’s exactly half my life ago, which is kind of wow. Yeah. It’s hard to wrap my head around. Yeah, I would love to hear more about your diagnosis journey, you know, how and when did you get diagnosed? What were some of your symptoms, and all that. I mean, like, it was five years ago, it was before the pandemic, okay. Yeah. 

Marissa:  01:21

I kind of, it was really just before the pandemic, like, the fall before the pandemic. So, I was lucky to get through the worst of the, like, when you’re first immunocompromised, and you get sick, like, at the drop of a hat, I was lucky to get through the worst of that before everything happened. But I had had like, chronic pain, my whole life basically, as long as I can remember. But it obviously took forever to get a diagnosis. But what happened was, I actually had surgery for a completely different problem. And then, I woke up, and I just knew something was wrong. And like within, it probably wasn’t even two weeks, like my elbows and wrists and fingers were burning. And like growing up with a mom who had RA, I just knew what that meant. And so, I got into see the rheumatologist my mom sees, so someone trusted. So, the diagnosis process as far as RA goes, wasn’t as bad, it was just kind of the diagnosis process of getting every individual thing figured out. Because, you know, it’s almost never just one thing.

Cheryl:  02:45

A hundred percent. And I, but I think the fact that you were having a lot of pain as a young person, even before this, like, big flare up, and it feels — I know, it’s Monday morning quarterback — but it feels frustrating that your pain wasn’t identified earlier, because having a family history is a strong clue that it might be, you know, RA. So, I’m sorry that your pain wasn’t really, it sounds like, taken seriously or treated adequately prior to the massive flare up. And, you know, sometimes people who have a direct family member, it can go either way in terms of the emotional response to the diagnosis. Like, I’ve known people who, you know, their grandma or their mom had rheumatoid arthritis, but it was all before the time of the current medication. And so, then they get really, really scared, whereas, you know, I’m curious, how did — what was your emotional reaction to the diagnosis? 

Marissa:  03:47

I sort of anticipated it just because I’m, like, once that big flare up started, it was sort of no longer a mystery. So, I didn’t have a huge emotional reaction to that. I had an emotional reaction to treatment. Because I went in expecting to be put on methotrexate because I know that’s a starting point for so many people. And I wasn’t because I’m a woman of childbearing age, my doctor didn’t want to do it. And so, I felt like I had a path. And I was just being diverted completely. So, that was sort of the hardest thing for me. 

And that actually made it into my book. She goes through the same kind of experience, because my character, Ivy, is in this 17, 18 age, where you sort of outgrow seeing a pediatric specialist and have to go see a rheumatologist. And she kind of reckons with that. She’s having trouble coming to terms with the fact that this is like the first time she’s been considered a woman in a medical context. That was also, you know, it wasn’t the first time for me, I was older than her. But it was still a big pivot from what I was expecting. And that was what I had the biggest emotional reaction to.

Cheryl:  05:30

So, that’s so interesting, because I didn’t — just comparing it to my experience, I was put on methotrexate at age 21. I know that, you know, that was 2003, though. So, things do change over time. But it was well known at the time. And my doctor was just like, adamant, like, make sure you have birth control and all that. But it’s always frustrating when it sounds like that what was frustrating was that you had an idea of what was going to be a treatment for you. And because of a situation out of your control, you weren’t able to take that treatment, right? And I’m so glad you put that in your book. 

Yeah, spoiler alert for those who just started listening and didn’t listen to the title. Because actually, I do that sometimes. If I’m listening to podcasts and like one podcast ends and my podcast player is just off to the next one. And I’m like, what am I listening to? Marissa is an author of a young adult book that we’re gonna be talking more about. And I think that representation is so important. I don’t know if you know — actually, sorry, should have asked you this before. I had on the podcast a few years ago now, Karol Ruth Silverstein, she wrote — yeah. 

Marissa:  06:40

[Points to bookshelf behind her right shoulder] Right there. Yeah.

Cheryl:  06:43

Oh, yeah, for those not watching the YouTube video, this conversation on the audio format, she just showed us the beautiful bookcase behind her. Go to the Arthritis Live YouTube channel and watch the video just to see, that bookcase is amazing. Yeah. She I loved how she represented on some of the, you know, she wasn’t doing the whole inspiration porn thing where you’re like, I have juvenile arthritis, but I’m just gonna be amazing and no worries. It’s like, okay, no, I’m grumpy about it. And I loved that representation. So, yeah, yeah. So, because you weren’t put on the methotrexate, what were you put on, if you are open to sharing your treatment journey? 

Marissa:  07:24

It was sulfasalazine first. And then, Plaquenil. Which luckily, it was before the pandemic before the whole, you know, Plaquenil shortage and everything. And I did not last long on those two medications, I had really bad side effects. So, I was on Humira as my first biologic. And that was probably within like the first couple of months after I was diagnosed. And I was on that for probably at least two years, like, through the worst of the pandemic, that was what I was on.

Cheryl:  08:05

And has it been working?

Marissa:  08:09

It worked for a while, and then I went on kind of a journey of trying to find something else that would work. So, I’m on Cimzia now. And it works really well. It has been for a while.

Cheryl:  08:22

Oh, that’s great. Yeah. And we were just in my Rheum to THRIVE support group yesterday, it came up this idea of, like, it’s really hard to know what to do when your medication is like, it’s working partially, you know. You’re like, I don’t feel as bad as I did during my worst flare. But I don’t feel as good as I did before my diagnosis. Like, do I settle? How did you — do I settle for a, they call it like, you know, a mild to moderate disease activity or partially controlled RA, versus shooting for like, full control. How did you end up — how did you navigate that?

Marissa:  08:57

I think it’s about kind of knowing what your baseline is, what you can tolerate as far as disease activity and fatigue and everything. Before it’s like truly interrupting your life and you’re having flare ups more often than not. And sometimes I would be hesitant to switch medications because I don’t know that it’s going to be better. It might be worse. You have like prior authorizations, and sometimes you have to be off meds for a while, just because of the whole, like, administrative mess. So, sometimes I definitely would — like with Humira, I stuck to it probably longer than I should have just because I didn’t want to go through the whole mess again.

Cheryl:  09:51

Yeah, it’s so complicated. Even if there weren’t the insurance barriers. For me, it’s complicated, like a bird in the hand is worth two in the bush. Should, you know, like, if my one meds is working, then I don’t want to risk trying a new med that might be better, but might be significantly worse. Although my rheumatologist and I had a conversation where she brought up a good point. She said, “Well, if you’re noticing a prolonged pattern of even if it’s a slow deterioration, like you’re slowly but consistently getting worse stiffness, worse swelling,” she’s like, “That kind of means the fire of inflammation is starting. Better to put it out when it’s small to medium versus waiting till it’s really bad. Because then, when you start the next med, you’re in a worse position.” 

So, yeah, that’s always, you know, a complicated, a complicated thing. And these are the kinds of things that people feel alone navigating but, you know, when we have representation through either, you know, television, movies, books, podcasts, it helps people feel like, “Oh, I thought that was just me, like, I was just failing to do this.” So, I’m so excited to learn more about what is it like to be an author, a writer, while living with, you know, with rheumatoid arthritis. And I have, like, 25 questions, but let’s just start there. How did you start delving into this world?

Marissa:  11:16

To start with, to like writing and being chronically ill were really separate for me at first. But nothing I was writing up until that point really felt true to myself, until I started to kind of incorporate these aspects of chronic illness into my work. Just because, like, especially with young adult, when you’re in first person, like this deep POV, and you’re in this fictional someone’s head, it’s like, I don’t know how to be, you know, not thinking about pain and fatigue and managing all that. So, they just sort of have to be thinking about it, too.

Cheryl:  12:04

Yeah, that’s so — and I meant to ask earlier, did you study writing in college? Or like, how did you, you know, did you always love writing as a kid? Yeah.

Marissa:  12:13

I did. Yeah, I have always really loved writing; I was an English major in college. And then, I did my masters in writing right after that. And I’ve taught writing. And it’s kind of been, like, the center of my world. But like I said before, there were certain things that I would do that I just didn’t feel emotionally connected to unless they have some kind of aspect of me in it, including chronic illness.

Cheryl:  12:49

That completely makes sense. So, you mostly, it sounds like, focused on on fiction. You’ve written a fictional book called ‘Joined at the Joints’, which we’re gonna talk about more in one second, but I’m just curious, just as somebody I also like, to kind of, I say, it’s like processing my thoughts through writing, through journal writing. In my case, more like, just this is what happened today. Like, nonfiction, but do you also do that kind of writing, private or public? Or not?

Marissa:  13:18

I don’t, because usually what happens is, whether it’s intentional or not, I will take what happened to me and make it happen to someone else. And I never, I never remember actively doing that, like, what I talked about with the methotrexate situation, I didn’t have a plan that that was going to play into the book, it just sort of did. And that’s kind of how I find — kind of how I process everything. Now it just sort of ends up showing up in my work at some point.

Cheryl:  13:56

I love that. It reminds me a little bit of like that, sometimes musicians will just — it’s not the same thing. But it’s adjacent where it’s like, they’ll inadvertently use like a tune or a theme from a song like from their childhood or something like that turns up in their other work or phrase or something like that. So, yeah, so like, I would love to hear more about, you know, your specific, this specific book that relates to a lot of people listening right now, which is ‘Joined at the Joints’. I love that title by the way. 


Marissa:  14:29

Thank you. 

Cheryl:  14:32

Oh, my gosh. So, what is your — give me your spiel about it or tell me about this story.

Marissa:  14:38

So, it’s a young adult romance novel where both the main character and the love interest have juvenile arthritis and they meet at a chronic illness support group. And they have this like meet group where they’re in this, you know, circle of chronically ill teens, but there’s someone right across, sitting right across from him that has the same disease they do. And it’s just sort of beyond the romance, it’s about medical self-advocacy, and social anxiety, and navigating that, like, jump from being someone who has a pediatric disease to an adult, and how the management of that changes and how you grow through it. And then, there’s aspects of friendship in there as well, both inside and outside the support group. So, yeah.

Cheryl:  15:37

I love it. Sorry, if you could hear me typing, I just I take notes while we’re talking. So, I’ve been told before I’m a loud typer. So, that’s why. But I mean, I just, first of all, yeah, this is like, when I got an email, I mean, I’m pretty selective about who I want to interview on the podcast because there’s — I get contacted by people all the time that are like, I want to sell you my like, in my mind, dodgy sounding, you know, supplement; I want to come to your best and educate your audience about something, that I’m like, no. But well, I got the email from the publisher, the PR person, I was like, this is checking, like, all of my interest boxes, like romance, check. Chronic Illness, and arthritis, obviously, check. Support groups, I love support groups. So, showing support groups, you know, even just representing the sort of things people do, maybe not even just in a positive light, but on a, you know — I haven’t read the book, for those listening, I will have read it by the time this comes out. But I’m very, very excited to read it. 

And then, medical advocacy. Huge, hugely important and hugely difficult to navigate, and then friendships, social life, all that. So, I’m just, I think that these themes are really going to resonate with people, I’ve had this kind of ongoing debate in my own head, like what is actually more helpful to patients at the end of the day. Like, a nonfiction, like what I kind of have done with my Rheum to THRIVE course. It’s like a, it’s a course; it’s based on, you know, medical evidence and facts. And that’s really, really important. But it’s also like, as humans, we’re storytellers, so — sorry, I’m just rambling now. But like, you know, when we learn, we feel less alone. And we feel more empowered when we see stories of people who are going through what we’ve gone through. So, anyway. But back to your specific story. So, you know, in general, what do you think is the state of the union right now when it comes to disability representation in young adult novels? Is it great, lots of options, or —?

Marissa:  17:50

There are lots of options that have come out in the past, you know, two, three years, like this, and this entire shelf is disability rep. 


Cheryl:  18:01

That’s amazing. 

Marissa:  18:03

So, I am in a group of disabled kidlit writers on Facebook. 

Cheryl:  18:08

Wait, what is kidlit, for those who don’t know? 

Marissa:  18:10

Oh, sorry, children’s literature. So.

Cheryl:  18:11

That’s okay. I just, I know.

Marissa:  18:14

Kind of like picture books all the way up to young adult literature. So, books for teenagers. And there are a lot, like, there’s also a group of — we’re called 2024 Debuts, everyone who’s putting out a debut novel this year. And I can, you know, think of so many people who have disability representation in their books. Not even just limited to arthritis, but a hundred different chronic illnesses and disabilities. So, it really has grown so much over the past few years. And I’m excited to be a part of it, and also continue to see it grow.

Cheryl:  19:02

Yeah, ’cause I can tell you, I was a very, very avid reader growing up in the 80s and 90s. And there was, it was, I actually was really obsessed with Helen Keller, and I read a bunch of books about her. But it was very much the one narrative of like the inspirational person with a disability. There wasn’t really a lot of representation about the true like ups and downs and seeing someone as like a full, you know, person with — makes mistakes, who makes mistakes and who, yeah.

Marissa:  19:38

Like, besides the like inspirational narratives, there are also ones that are just sad for the purpose of being sad. Like the main characters die of some illness or something. There was a big trend of that like sub-genre a few years ago, and I think, if I’m honest, I think it inspired this like new wave of disability representation because we were all just mad.

Cheryl:  20:09

Yeah. Yeah.

Marissa:  20:11

The only time we would see any kind of illness in, you know, a book like that, that, you know, went viral or hit the New York Times bestseller list or whatever, were those narratives that were just sad for the sake of being sad.

Cheryl:  20:29

Yeah, I’ve seen a little of that debate, which definitely makes sense. I really liked ‘The Fault in Our Stars’ by John Green, which I know some people kind of put in that category. I think he’s just a great writer. But he, my favorite book of his is, if I don’t know if you’ve read it, but ‘Turtles all the Way Down’. And he has OCD in that book, the character has OCD, and it really, it really captured that, to me, I guess. But, but yeah, you’re right. It’s like, what is the purpose of the representation? Is it just to make, to other the person with a chronic illness and be like, they’re so, it’s so sad, and then they died. Like, what’s the point? You know, people do die, like, you know, people die of illnesses. Like, that’s something that can be — their stories are important. 

But I read, I’m sorry, this isn’t a fiction, it’s a nonfiction. But what’s his name? I just want to say the wrong name. He had a child that died. He’s an actor that had a child that died from cancer and — oh, ‘A Heart that Works’ by Rob Delaney. “A heart that works is a heart that —” the longer quote was, “A heart that works is a heart that hurts.” Yeah, and that’s a really good, like, that’s, I mean, you can’t argue with what it is. It’s a true, you know, nonfiction story about how their family navigated pediatric fatal cancer with their middle child. But anyway, okay, sorry. Back to your story. That’s just how my brain works. It’s just going all over the place. And so, like, if someone who’s maybe someone listening here, who is like, I’ve always wanted to write a book, you know, how do you recommend getting started?

Marissa:  22:27

Well, they say, write what you know. And that really does resonate with me, because like I said, I wrote, you know, a hundred different things that had nothing to do with me. And they just felt impersonal, and like they belonged to someone else. So, I’m always a person that starts with a character rather than a plot, like, you know, I’m not like a fantasy writer who can tell you about this incredible world that they’ve built. It’s like, I just sort of make someone up and put them in my world. So, I don’t know how to do the reverse, because it’s a kind of debate in writers communities, what you start with, the plot or the character. But I think you, if you want to write a book, you have to decide which you are. Like, when you think I want to write a book, what are you seeing in your mind? Are you seeing the plot itself? Or are you seeing this character that you want to build? And then, just focus on that. And kind of let it take over.

Cheryl:  23:39

So, I never even thought of that. Like, do you start with — yeah, it was assumed the fantasy people started with, like this world, like, because sometimes the fantasy books even have like a map, when you, you know, read them. But that, yeah, doesn’t mean that they started with it. They could just started with the character. And yeah, I think it’s, I think the whole writing process is seems really magical to me, from what — I’ve never really tried in any sort of consistent way to write fiction, but since like college 20 years ago, but I have heard that it’s almost like — what do people say? Like, it’s like the character. It’s like, you’re the funnel. You, as the author, are the funnel through which the character does things. So, like, what does that feel like? Does it feel like magic?

Marissa:  24:26

Yeah, to me, it does. Yeah, that’s what I have, like, one thing that I’ve had to do is separate writing from publishing. Because it’s two different — writing is an art, publishing as a business.

Cheryl:  24:39

Yeah, oh, I love that. Yeah.

Marissa:  24:41

Writing still feels like magic to me. And I told myself like if it ever gets to the point where it doesn’t, that’s when I have to stop. Because it’s been such a source of therapy for me, and a source of expression and I don’t want to lose the catharsis of writing in the kind of admittedly messy world of publishing.

Cheryl:  25:09

Oh, my gosh. That’s such a, that’s such an important thing to think of, yeah, to separate. I didn’t, again, you’re saying things I never thought of. I’m definitely one of the people — just for the record, I’m one of those people that has like a dream of like, one day, I want to write a book, too. So, I get to the point my life where I’m like, okay, it’s kind of one day, like, you’re 40. Do it now. You gotta get on this. But so, I’ve written — I, actually, the other thing that really was perfect timing with your book coming in and me getting to know you and your book is that I recently earlier this year joined a Radical Romance Book Club here in Seattle, Third Place Books. 

And yeah, the idea of radical romance is about, as defined by them, is representation of historically underrepresented groups in romance. So, whether that’s you know, different, you know, multiracial couples, people in different countries or backgrounds from the standard American story. And it included, the way I heard about it, was they were doing Chloe Liese’s book, you know, ‘Always Only You’, and the main character has rheumatoid arthritis. And I fell in love with that book. And I read the whole series, the Bergman Brothers. And so, it’s just been a — and I realized that I had had a knee jerk reaction against romance novels, even though I’m like, totally like a serial monogamist like in front of my husband, like love being in a relationship, love love, watch love movies, and you know, love stories, romcoms. 

But when it came to reading, I thought, I think it’s because I grew up, it was like, romance novels is associated with like books with this cover of like Fabio on them. And they weren’t really any — like, I realized when I started reading them, like, oh, these are just the majority of the book. This is adult, you know, romance, but the majority of the book is the complex interhuman dynamics of loving someone. And then, like, again, for the adult ones, it’s like, and then there’s some steamy scenes, you know, that are really fun to read. But like, that’s, anyway, so I’ve really transformed my understanding of what romance is, but can you tell people who are listening, what’s the difference between like an adult romance versus a young adults romance and young adult genre?

Marissa:  27:34

Anything young adult needs to be written for teens. So, you have to weigh, like, keeping it appropriate for teenage audience, even though, you know, teenagers, they’ll watch and see stuff much worse than what’s in any book. But especially with book banning happening across America for, you know, ridiculous things like someone swears once and now that book can’t live in the library anymore.

Cheryl:  28:08

Oh, my gosh. Yeah. So frustrating.

Marissa:  28:12

The balance is typically — and it’s up to the author and the publisher, too, but the balance is keeping everything appropriate for a teenage audience and making sure that you are centering your teenage audience and not writing YA for adults, which is kind of a thing that’s happened. Like, you think of really popular YA romances, and you can sometimes question if they were written for a teenage audience, or if they were written for the adult audience in mind. 

Cheryl:  28:52

Do you mean when they write for the adult audience, is it for, like, to teach the kids that they should follow the rules actually, or something like that, or —?

Marissa:  29:02

No, I think it’s just writing for the adult audience can kind of be just making it appeal to adults more than it appeals to teens. And it’s difficult to balance especially with as many adults as are reading YA right now. Which is great. Like, don’t get me wrong. I love, I mean, I’m an adult who reads YA. You always want to make sure as an author that you are keeping your focus on your ideal audience. And that’s always in YA, for me, gonna be for teens.

Cheryl:  29:45

Yeah. Oh, I’m so like that. I joke, I feel like the mom in the original Mean Girls, like Amy Poehler, who’s like, “Hey, girls, what’s up?” I love reading YA. I like, well, I think I always say it’s because I had like, or I mean, I just intrinsically like it. But also, you know, I had a good experience in high school, I like reliving my glory days, you know, and reliving some of those dynamics. They just don’t change when you get older, you just get better at coping, you know? But yeah, that’s a really, really good point. And I realized I’ve been going on all these directions, but I want to go back to the the specifics of the ‘Joined at the Joints’, you know, the story. Is there anything you, like, if someone’s listening now who’s like, oh, my gosh, I haven’t read a book in — oh, this blow my mind, there’s the statistics, like, 70% of Americans haven’t read a book this year or something. What would you say to some, like, what would you say to somebody who might be like, I don’t know, I’m on the fence? Like, I don’t know, that’s kind of maybe, that’s, to me, that’s a hard question to answer.  

Marissa:  30:51

No, I mean, I would say that a lot of people who haven’t read, you know, a book in however long, I would say YA is a good place to start. Because it’s faster paced then a lot of adult books. They’re shorter usually than adult books. Because we say, like, as soon as they open the book, with teenagers, you have one page, and you have one page to hook their attention, or they’re putting it back. But with adults, you know, they’re gonna read one chapter or, you know, they have a little bit more patience with when it starts to get interesting or whatever, but with our like audience in mind, who needs to be hooked right off the bat, that makes it easier for people who don’t tend to enjoy reading to enjoy. And then, also in books in other formats like audiobooks or even it’s easier to read on a phone or a Kindle or something like that. It’s a good way to get back into reading.

Cheryl:  32:03

Those, well, I already was convinced. Those are great. Those are great points. And I’m gonna brag for you. There’s on the back of the book — I got like an advanced copy so I’m very special — one of the review says, “‘Joined at the Joints’ is full of heart, showcasing the importance of love and community. Marissa Eller serves up a sweet and affirming story that embraces the unpredictability of chronic illness.” That’s from Anna Sortino, Anna or Anna Sortino award winning author of ‘Give me a Sign’ and ‘On the Bright Side’. And those who’ve listened to the podcast before know that this is one of my favorite things to unpack. Or least favorite things to experience but favorite things to discuss, which is unpredictability. I really love that she called that out in the — well, first of all, obviously it’s a great review saying it’s a good, it’s a good book. But also, so can you tell me where how does unpredictability play into this story?

Marissa:  33:05

Yeah, so that was one thing that I did intentionally, it wasn’t one of those things that kind of just happened. Because I wanted this, like, chronic illness flare up at some point in the book to feel to a reader who hasn’t experienced like a huge plot twist. But to someone who experiences it, you know, once a month or whatever, they’re like, “Okay, yeah, I was expecting that at some point.” But you didn’t know, you didn’t know it was going to be at the next chapter. Just like in real life. You know, we’re all kind of expecting some horrific flare up to happen at some point. But we don’t know if it’s gonna be tomorrow. So, I wanted it to feel abrupt and feel like the story was taking a turn if you were a reader who hadn’t experienced anything similar, but I also wanted readers who have experienced chronic illness to kind of anticipate it just a little bit.

Cheryl:  34:05

That’s so, that’s so great. I think it was just remembering my high school English teacher saying, “Show, don’t tell.” Like it’s one thing to say, I know, you know. But for people listening, it’s like, you know, it’s one thing to tell your friends like, “Hey, my flare ups are unpredictable sometimes. I don’t know, I did everything right the day before and I wake up the next day feeling bad.” It’s another thing to show that through a story and just feel that emotion of when that happens. It’s not just like a, “Oh, yes, flare ups are unpredictable.” It’s like I had this hope and this dream and expectation of what was going to happen and now it’s like been completely — what’s the word — stymied, you know, by this thing out of my control. And is that something like in your experience, having had RA for five years now, how have you coped with that unpredictability?

Marissa:  35:00

That is one, one thing that I’m bad at, because I just, I like to plan. And there are some things that you just can’t. Like you, you know, you wake up one morning and you can’t get out of bed. And I’ve, I have learned to cope with it physically much better than I have mentally and emotionally. Especially if I have to break plans with someone or call out sick from work or something like that. There’s always a huge sense of guilt. And no, you know, it’s not something I could have prevented. It’s not something I could have planned better for. It’s just a thing that happens. 

And that was a difficult thing to balance for me with the book because I wanted her to be, to kind of feel some of that guilt, because I think we all do, but also not overly beat herself up about it. Because I don’t want like a teenage reader who’s going through the same thing to read this and think, “Should I be harder on myself for missing out on things because I have a flare up?” you know, so, it is difficult to balance the reality with being overly negative, if that makes sense. And I think that that’s why it ended up being such a, like, soft romance. Like, just very sweet and wholesome on the romance side, because they both have the same illness. And they find commonality in that. And anytime, you know, she’s beating herself up about missing out on something. He knows exactly how that is. Because he’s done it before, too. It happens all the time.

Cheryl:  36:48

Yeah. I love that. Yeah. It’s like everyone needs that person in their life, whether it’s, you know, a romantic partner, or friend, coworker that when you say, “I’m fine,” they’re going to be like, “How are you, really,” you know? Like, and I was just, I interviewed someone else yesterday, which this is going to come out like, the week. Anyway, it’s gonna come out a different time. But I talked to someone yesterday who we talked about how like, with disability representation, if everyone pretends that they’re doing fine all the time, and then everyone’s just walking around with this collective, like, feeling bad that they’re the only one feeling bad when actually everyone’s feeling bad. And if we just showed it, like, heart on our sleeve, we would all be united in this. 

So, yeah, yeah. And I just, I think it’s, I think it is something that, you know, the person talked yesterday has alopecia, which is a very visible, autoimmune condition; you have no hair. Rheumatoid arthritis, juvenile idiopathic arthritis, they are usually — depending, not always, on the severity — they are typically these days with medications, invisible conditions, or not obvious at first glance conditions. So, she said, the number one question people ask her is about like dating and relationships and, you know, how to still see yourself as worthy and lovable. Was that kind of on your mind as well, in writing this? 

Marissa:  38:14

Yeah. That’s another reason why I wanted them to both be chronically ill. And to have not even just like a chronic illness community in each other, but in this support group space, where everyone’s kind of understood. And like with Ivy having social anxiety, she just doesn’t want to go to the support group, she has to be kind of tricked into it a little bit. But it ends up being her safe space to navigate other friendships that are happening at school and how her illness is impacting those friendships. So, I wanted her to have kind of multiple safe spaces to go through what she’s going through. 

Cheryl:  39:05

Yeah, that makes a lot of sense. And I, you know, I’m curious, did you ever join a support group?

Marissa:  39:12

I’m in a couple online support groups. And since I did kind of get diagnosed right before the pandemic, that’s sort of all I know, support group wise. And I’ve only I’ve also always had a support group in my mom, really, because we’re sort of, you know, if I had questions about medications or something, she’s always there to answer because she’s been through the same thing. 

Cheryl:  39:39

Yeah, that’s, and I know that, at least some of the rheumatologists I’ve talked to who said like, if you have a blood relative, particularly like a sibling or parent, with or with the same condition, it’s always good to tell your doctor because if specifically, especially if one treatment worked really well for them, they might be more likely to try that treatment for you. So, that’s just a little tidbit for people listening. Is there anything else you want to say about the ‘Joined at the Joints’ book specifically?

Marissa:  40:10

I don’t know. I feel like we’ve kind of covered most everything.

Cheryl:  40:16

Good, good. Yeah. I always just like to ask that. Because sometimes when I’m being interviewed, I’m like, “Oh, I have this other point that I like, really wanted to make.” Yeah, yeah. No, that’s good. You did a good job. So, the other question before we go to the rapid-fire questions, I’m just curious. You know, I’m an occupational therapist, and I was thinking about, like, the pragmatic side of things to some degree. So, are there any challenges you’ve had being a writer, like, literally writing with chronic illness and rheumatoid arthritis? Like, do you ever, you know, if your hands are sore, do you ever use speech-to-text or any, do you write by hand? Like, how does that work?

Marissa:  41:01

I do write by hand sometimes, just because I feel like it’s easier on my hands and wrists. And sometimes, when I’m writing for a long time, it’s not my hands and wrists that bother me. It’s like, my neck and my shoulders. And because I’ve been hunched over. But most of that comes from, like, writing not being my full-time job. Like, I get everything done I need to do in a day. And then, I write and usually it’s like, you know, 10 o’clock at night at least. 

Cheryl:  41:32

Oh, my gosh. Sorry. I’m a morning person. So, I’m like, that’s a time.

Marissa:  41:41

Yeah, a lot of people I know, have a 5am Writer’s Club, where they get up before work. I tried it. And I could never, I could never do that. But that’s where most of that comes from. Like, I feel like I would be fine if all I had to do in a day was get up and write like, I would love that. But.

Cheryl:  42:00

Yeah, yeah.

Marissa:  42:01

That’s not, that’s not how it works for most authors. And so, I run into days where I want to write and I feel like I need to write but also like, physically, I’m just kind of done.

Cheryl:  42:17

Yeah. And I was — I mentioned the more, like, the mechanics because of the hand, that’s typically what’s affected. But there’s also the systemic things like fatigue that we can experience. And your full-time job is teaching writing, is that right?

Marissa:  42:33

It’s academic consulting and writing. Yeah. 

Cheryl:  42:37

Oh, so you consult the students or other academics.

Marissa:  42:41

I help people with their medical school applications. So, all the writing that’s involved.

Cheryl:  42:46

It’s amazing. Sorry. That’s so cool. 

Marissa:  42:50

Yeah. So, I help a lot of people with the kind of academic writing that you have to do to get into medical school, which is ridiculously complicated process.

Cheryl:  43:03

I just wrote a med school app, oh sorry, a med school letter of recommendation from somebody I’ve worked with who has juvenile idiopathic arthritis. The stress that I felt just on following the labyrinthine instructions on how to write this letter of recommendation, I can’t imagine the actual application. Yeah. Oh, that’s so cool. Sorry, I didn’t quite catch that that was your job? Did you start your own business, or do you work for a —?

Marissa:  43:33

No, I work for a consulting company. And it works out really well. Because I work from home and I have flexible hours. So, I can, you know, take breaks when I need to; sleep late when I need to. All the things like that. And the best part is I don’t have to tell anyone when I have to go to the doctor like so many people do in their jobs. I was so excited about when I got this job. And for good reason. 

Cheryl:  44:02

Yeah, I, you know, if you can swing it, a flexible job solves so many of the challenges of the unpredictability of flare ups. So, I think that’s a beautiful, that’s a beautiful example of that. So, okay, now it’s time to get myself organized, beating the brain fog. Now, for the rapid-fire questions. Do you have any any kind of words of wisdom or advice for somebody listening who might have just gotten diagnosed with either, you know, juvenile idiopathic arthritis or adult rheumatoid arthritis?

Marissa:  44:41

Something that my rheumatologist told me I think during the appointment when I was diagnosed was be patient with yourself. Like, you have to be patient with yourself. You know, if you’re right at the point of diagnosis, your life is probably about to change. You know, with medications and fatigue and side effects and all that. So, you have to give yourself some grace. Give yourself the grace you would give someone else. And that, obviously is so much easier said than done, because that’s something I’m still trying to work through now. And I’m five years into it at this point. 

Cheryl:  45:20

I’m working on that and I’m 21 years in. I think it’s best to assume it’s going to be lifelong. It’s like perfectionism. It’s a lifelong process to retrain your brain and yeah, I so feel you on that. Sorry, I just jumped in because I was like, I relate to you. Yeah, it’s the hardest thing, to be patient. Do you have a favorite arthritis gadget or tool in your toolbox?

Marissa:  45:46

Um, let’s see. Oh, something I always have in my purse is this — [Video pauses]

Cheryl:  45:55

Oh, hold on a second.

Marissa:  45:59

Daily meds and things I might need.

Cheryl:  46:03

Oh, can you say that again? Sorry, it it lagged for a second, it froze? 


Marissa:  46:08

Oh, yeah, sure. 


Cheryl:  46:10

It might be just on my end, but say it again, just for the record. 

Marissa:  46:14

So, something I always keep in my purse is this little like, they call it a pocket pharmacy. And it’s not like my daily meds. It’s just stuff I might need while I’m out or while I’m travelling so I don’t have to take like 60 pill bottles. I just have to take this little thing that has like muscle relaxants and Zofran and all the stuff that I might need in addition to whatever I take on the daily.

Cheryl:  46:38

I love it. And in your bio, it says that when you’re not reading, writing, or helping students, you can be found thinking entirely too much about your favorite TV shows. So, I’m curious, what are some of your favorite shows?

Marissa:  46:55

Right now? Probably Bridgerton. I’m very excited about Season Three.

Cheryl:  47:00

Yeah. 

Marissa:  47:01

Let’s see. I also like, love the Food Network in general. Anything on the Food Network. Let’s see. Abbott Elementary is probably my number one favorite show? I love it so much. 

Cheryl:  47:21

I need to remember the name of it. But I read a — my free recall memory is abysmal at times. I read a really cute romance about two — what is it called? I’m gonna look it on my Kindle app after this. But they it’s in the in the realm of, you know, stories that represent things I haven’t experienced. It’s like a two Pakistani people that fall in love through — oh, yeah, engaged by accident or something. It’s like engaged by accident or married on accident. Where they have, they pretend to be an engaged couple so that the woman could go on this cooking competition shows like a show of all — do you know what I’m talking about? Farah. For some reason the name of the author came in my head, Farah. ‘Engaged by Accident’? Oh, Farah Her — Farah Heron. Okay, it’s Farah Heron is the author’s name and the book is called ‘Accidentally Engaged’.

Marissa:  48:23

I have read that. So cute. 

Cheryl:  48:27

It’s so cute. And it just has to do with food. So, there’s a lot of food in there. And I’m gluten free and there’s a lot of like bread and I’m like, salivating, like, one day maybe I’ll eat bread again. And then, what about — I mean, this is this is a scary, this is a dangerous question to ask an author. But what are some of your favorite books?

Marissa:  48:47

Let’s see. So, my favorite books are the ones that have some sort of representation that I love. Mazey Eddings books are my favorite. [48:58 Name?] Let’s see. A lot of debut authors I’m debuting with this year, like one book from my publisher comes out today, Natalie Leaf. Well, let’s see, who else? Aaron Hahn. I love Serena Taylor’s books. I love —

Cheryl:  49:20

Oh, my gosh, you’re giving me so much to read. I’m excited. I’m so excited. I’m adding to my list.

Marissa:  49:25

Naming things off the top of my head. 

Cheryl:  49:28

That’s awesome. Okay, I hope that, yeah, I need to do a book club, a chronic illness book club because I feel like that’s needed. That would be so fun. Do you have a favorite mantra — I’m saying that word very loosely — or like inspirational saying that you find yourself telling yourself, like I do. Mine’s like ‘We can do hard things’.

Marissa:  49:50

Yeah. I really just kind of repeat the, like, ‘Be patient with yourself’ often. It’s the thing I have to kind of tell myself most often just when those like thoughts spring up. And I think it’s easier because it came from someone else. So, it’s a little bit of that listening. And I’m trying to convince myself.

Cheryl:  50:21

Yeah, that that makes a lot of sense, that makes — a lot of times it’s like easier to, or this is kind of an adjacent thought, like, it’s easier to give someone else the advice that you need, than to give it to yourself. Like, I found that actually facilitating a support group. I’m like, wait, I need to do this, like I need, I’m telling someone, like, “Be compassionate to yourself.” I’m like, practice what you preach, lady. Okay, and last one of the rapid-fire, although this could be a long one, what does it mean to you to live a good life and thrive with rheumatoid arthritis?

Marissa:  50:55

To me, it means that I’m still doing what I love, I’m still able to live out my dreams. I’m still able to go out and meet with friends and see family. And it means that I’m happy day-to-day, whatever that means for anybody. That even, you know, in the worst of a flare up, I know, it’s just going to pass and I’m still going to be okay.

Cheryl:  51:31

Yeah, knowing that’s gonna pass. That’s so huge. And I was just talking to some people yesterday in my group that were new, more newly diagnosed, and I realised, yeah, the first time you have that flare up, you don’t know that it’s gonna eventually pass. You know, once you accrue some experience, you’re like, okay, well, it’s like that you’ve survived a hundred percent of your worst days. But it’s hard to believe that when you’re on, like, day one of your worst day. Like realistically, am I really —? I remember my — sorry if this is out of left field. But I remember one of my really vivid memories from like the week or two after my son was born, I really struggled postpartum in every single way you can imagine, yet was attempting to delude myself the whole time that everything was fine. So, it was, I’m sure I was really fun to deal with. 

But, you know, at one point, my sister was like, “I know it sounds impossible. But like one day and it’s going to be, like, in less than a year, your entire life is not going to revolve around feeding the baby, putting the baby to sleep,” and I’m like, that’s not — I can’t imagine. Like, you’re telling a fairy tale, like unicorns are not real. This is not possible. Like I know, I trust you, because you’re one of the most important people in my life. And you’re so smart. And you already also had, she already had a baby. And so, I know she knows she’s been through this, but I’m like, no, it’s, but it’s never, it’s never, like, I didn’t believe it, you know? Oh, anyway, hashtag memories. Listen, if you are postpartum, it is true. The rumors are true, it does get better through time. Your life doesn’t, it doesn’t remain hard in the same way as it is in the immediate postpartum period. The rumors are true. But anyway, thank you so much. It’s been really, really fun talking to you.

Marissa:  53:23

Thank you so much for having me. 

Cheryl:  53:25

Yeah. And where can people — last, last question — where can people find you online?

Marissa:  53:31

My website is just marisaeller.com. And I’m on Twitter at @MarissaEller, Tik Tok at @MarissaEller. And Instagram is @TheMarissaE.

Cheryl:  53:44

Okay, so Marissa Eller, I’m adding that to my little list here. It’s Marissa with one R, two S’s, and then Eller with two L’s. Yeah, E-L-L-E-R. So, I will have all these links in the show notes, which are always on the Arthritis Life website, which is arthritis.theenthusiasticlife.com, which is theenthusiasticlife.com was the you URL I created in like 2010. And I’m like, I’m so glad I did that, because I like that. Anyway. But thank you so much again for coming on. I hope people do order your book. It’s out in July…


Marissa:  54:21

2nd. 


Cheryl:  54:22

2nd. Okay. Just wanted to make sure. 

Marissa:  54:23

Four weeks from today. 

Cheryl:  54:25

Okay. Oh, yeah. And people should — actually this should come out right before, so maybe preorder it I know, pre-orders are important for authors. Yes. So, consider pre-ordering it, I highly encourage you to even though I got an advanced copy, I’m still going to order it to give you those.

Marissa:  54:44

Thank you so much. 

Cheryl:  54:46

And then that way, also, if I order it through Amazon, which I know it’s not the best place, but I can then write a review if you’ve ordered it. You can’t write a review of something if you haven’t ordered it. So, I’ll write a good review. I won’t be one of those people that’s like, there’s people that’s like I started this and then didn’t like, and you’re like, why did you take the time to review if you didn’t even read it. Like, anyway, little rant. Anyway, thank you again and I’ll see you on social media. 

Marissa:  55:12

All right, thank you so much. 

Cheryl:  55:14

Thanks. Bye-bye! 

Marissa:  55:15

Bye. 

[Ending music]